I didn’t start this blog to talk about CFS

I really didn’t. However it is a huge part of my life at the moment so not easily ignored.

So it seems that I keep gravitating back to CFS all the time. Talking about it, thinking about it, living it, dreaming it. It is always there.

Whilst I hate it, I also have a respect for it that I would never have thought possible 4 or 5 months ago.

 It has taught me some very valuable lessons;

1. Work isn’t everything. Being at work for an extra 3 or 4 hours a day will not make you happier.

2. Make the most of the bad days. Make ‘resting’ or ‘relaxing’ fun. Odd thing to say I know. Sometimes the pain is too much, sometimes the head is too foggy. But I use these days to catch up on films/programmes I love. I laze in bed and read a book (although I doubt I actually read much, but the process is quite a self-indulgent thing to do in my opinion). Have a lovely bath with bubbles and smelly candles (I don’t do this to be fair very often as I really am not a fan, but I know many people are). Have something you really love for lunch/dinner. Spoil yourself (as best you can within your limitations). Even when I was more or less bed-bound I had a stack of dvds and my laptop in my bedroom, and would watch endless episodes of ‘Peep Show’ or ‘The IT Crowd’. Maybe an episode of ‘friends’ here and there. Anything that breaks the constant monotony of staring at the same four walls.

3. Appreciate the good days. They may not last (but lets try not to think about that please!), but whilst they are here just enjoy the small pieces of normal life you may encounter.

4. Do those jobs you never got around to. For me that was organise and update our address book. Organise the birthdays lists. I spent hours (over the course of months) organising my copious amounts of photographs on my laptop and trying to re-file in a sensible(ish) order.

5. Teach yourself something new. I decided that learning to put eyeliner on successfully was very important. It’s a new skill which, I have to say, I am pretty damn good at! 😉

6. I also now know that ‘through sickness and in health’ were not just words you say when you get married. It’s real. 🙂

Overall though I have learnt that there is no point to having a life if you don’t use it to the best of your ability. It’s there for the taking, so take it. No matter how limited, or bad your day, there is always something to grasp onto to make it a little brighter. I’ve learnt this lesson the hard way, and I still have more lessons to learn before I am back to this elusive ‘normal’. I like my 80% normal though – for the moment anyway.

S. xx

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I’m not great at updating this regularly

April 26, 2010 2 comments

Please see the title.

I am truly rubbish at sticking to things. More so now than I ever used to. It’s not that I cannot be bothered, it’s more that I just forget. Plain and simple. Another symptom of CFS which is both frustrating and scary in equal measures. How can I qualify that sentence?

Simple. I get extremely frustrated about my brains apparent lack of memory, or at least short-term memory. I used to have the memory of an elephant. I would never forget anything (much to my dismay). I used to be able to say to my husband “I did tell you that” with the full knowledge that I remembered things correctly, and he, being a little absent-minded, didn’t (possibly harsh, but very fair). However I don’t have that luxury anymore. This is where the scary kicks in. I forget simple things (such as have I taken a certain medication today – I could easily double up where I shouldn’t). It scares me that my memory might never be as it once was. It scares me that I maybecome even more forgetful or scatty.

That being said, I am finding that using sites such as facebook and twitter are fantastic. I regularly put up (boring & random) updates. This is becoming my short-term memory. I frankly can’t remember even doing some of the stuff I update, but it does help to jog my memory a little. It’s strange though isn’t it how social networking has become a part of everyday life. It is becoming the norm in so many instances. It’s quite dangerous in a way too as it opens you up to more scrutiny than ever before. I find some people bare their souls on facebook for friends, colleagues and relatives alike (plus in many cases friends of friends of friends…). People are brutally honest about work/play that they can seriously jeapordise their ‘connections’ (for want of a better word) with others.

I do wonder what people think about what they post extremely intimate and personal information on these sites, though I am sure I am also at fault here. Do they not see that, perhaps, they may be just giving too much information?

I have no idea.

Anyway, completely went on a tangent. I actually wanted to quickly talk about how i’m feeling at the moment. I’ve been taking Anti-Depressants for 8 weeks now. My husband and my mum have both commented that they have noticed a change in me, that I appear to be happier, a little less ‘woe is me’ all the time. Thinking about it, perhaps I am? Things do seem a little easier to deal with at the moment, even though I am still struggling to break down the current barrier. I really want to feel like normal, yet I am not as concerned about it as I was 2 months ago. I was panicking regularly beforehand, yet now I am just a tiny bit more relaxed about it all.

I am still worried though, lets not be mistaken by thinking i’m okay with everything. I am worried that I won’t get past this barrier at all. I keep trying to balance it all up and if I want to go out/do something extra outside of work during a week, then I can pretty much guarantee that I will struggle at work. And vice-versa. Frustrating.

But, perhaps this is a good thing? Knowing my limitations. Working within them. Helping me to become a better person with a renewed respect for my life.

I can only hope that I am being premature in my worries though. I’ve only been ill for 13.5 months. Some people suffer for a lot longer, and with more severe symptoms. I am lucky. I truly am. It could be a whole lot worse. At least I have some ressemblance of a ‘normal’ life, even if not what I want.

It’s easy to moan, but harder to realise that life really isn’t that bad.

S. xx

How do you explain how you feel – Chronic Fatigue Syndrome

To be able to explain how I feel is very difficult. To the outside I look, generally, well. Or at least as well as I ever have done. Chronic Fatigue Syndrome is not an illness you can see. It’s not something you can tell by looking at someone that they have. It affects everybody differently. To me, it’s not a disease, but more a term to explain a set of symptoms.

You might also be mistaken to believe that it’s just about feeling tired. Whilst that is partially true, it is so much more than that.

I used to work night shifts. I know what physical exhaustion feels like. I know that feeling in the last few hours of being awake for almost 24 hours (when you have tried, but failed, to sleep before you started working, but by the time you need to sleep, you are actually working so can’t). I have felt that before many times.

This is very different.

The most difficult thing is to help people to understand what this feels like. It’s not just feeling tired after a busy day. It does not mean I just need to sleep.

To start with the muscles in my body ache most of the time. There are different levels of intensity, but always there is an aching. This is coupled with my bones feeling like jelly. Almost as if a sharp pain is running through them causing it. Again, the intensity changes, but it is there consistently.

The nausea can be debilitating, but generally manageable.

The headache is there all of the time. Not too pounding, but ‘there’. As if it were a hat that I couldn’t take off.

I often feel that I have something stuck in my throat that I can’t get rid of by simply swallowing.

I forget words. I struggle to put them together in a logical order and then completely forget what I was trying to say. This happened beforehand on occasions; however this is now a more frequent experience (daily rather than once in a blue moon).

My short-term memory is very lacking. It’s not that I don’t remember that I have been told something. It’s just that I don’t remember what that something was. This is one of the hardest things to adjust to as I had previously had the kind of brain that would rarely forget.

When the brain fog kicks in I might as well just sit and stare out of the window as if I try to do anything during this time, I will need to re-do it.

Sleep is sporadic at best. Even if I have a good sleep it doesn’t necessarily make me feel any better. It is not restful.

This isn’t intended to be all woe is me, far from it. By comparison, I only suffer from the mildest form of CFS. I won’t say that’s it not difficult, because it is. But things could be much worse.

I have used work as a crutch to aid my rehabilitation. It has given me a focus and a reason to get up every day. It gives me the glimpse of normality that I crave. It does come at a price though. I can manage a full time day. I can get home, however within a few hours my symptoms intensify. I start shaking (if I haven’t already earlier in the day). I ache. My headache becomes more obvious. I struggle to keep my head up. My limbs get heavier and it is all I can do to get myself upstairs to try to sleep.

I can manage three days in the office. And to do this I need a break after two. My rest day is generally used to just focus on doing very little. To allow me to try and rid of the aches just a little. To make the rest of the week seem achievable.

Even then, one further day in the office, though manageable, takes more effort than the others. By the end of the day I am ready to give up. I don’t though. It has been increasingly difficult over the months to not let the frustrations take over. And at times, I have let that frustration take over. I have allowed myself to wallow. I have found it difficult to get the enthusiasm to get up and face the world. There is no shame in getting help for this, and whilst I am still fighting for full health, I need that additional support that the Anti depressants have started to give me.

Ultimately, while at work I put on my normal mask. I need to, to ensure I get through the day. I don’t have any pressure on me to do that by anyone other than myself.

I don’t resent working; I relish the opportunity to continue to be as normal as I can be. The problem I face is that by putting all my energies into that, I struggle to do little else. Again, this is a pressure I put on myself. This will balance out, but I don’t yet know when as this step has taken a lot longer that the previous increases. But then I am asking my body to be 80% normal, and I don’t think it is there quite yet. I think I am happy to accept this at the moment.

There is no easy answer as to how long it might take for this to be over. I am hopeful that I am on the finishing straight, but have learnt this harsh lesson already, that you can’t push it too fast. It will be over when it is over.

No inspiration

How long does it take one person to update their blog?

Currently? About 30 minutes. And this is all I have written. Rubbish.

Maybe I should try again tomorrow when my head isn’t so spaced out.

Categories: blog, random musings Tags: , ,

Tired

I am feeling really sleepy but not enough to fall asleep, but enough to allow the grumps to make an entrance. Grrrrr.

Happy 1st March everyone. Let’s hope that it is better than the last 2 months. 🙂

Nothing more to say today. I really should try to get to sleep.

Goodnight. x

Oh, to be well-educated

February 28, 2010 Leave a comment

I’m sure I might be classed as well-educated, but that doesn’t mean it is well-remembered.

I don’t understand really intellectual things. I don’t remember many of the ‘important’ things we were told were useful at school. I did French up to GCSE level, but I’ll be amazed if any of it stuck. I don’t have a brain that is in any way scientific. I often find myself, in a group of people, just nodding and ‘mmm’ing along when others do. I wish I were intellectual then I could amaze people with my fabulous wit, wonderfully delightful anecdotes and, most importantly, understand what they are talking about.

I know my level. I have a brain that remembers inane rubbish. Celebrity gossip sticks in my brain from hearing it just the once. In fact, I don’t actually want to remember this stuff. I often find myself pretending I don’t know who Jordan has married this time, or which sugababe just left the group as it is too embarrassing to admit that I do! I am sure all this ‘easy’ knowledge is slowly pushing out the last remnants of my intelligence. What am I to do?

So, bloggers of the world, recommend to me some of your most intellectual, important blogs that you follow. I need to improve my brain size BEFORE IT’S TOO LATE!

Help me!

So, how regularly should I post?

February 28, 2010 3 comments

Do good bloggers post every day? Or is less frequent acceptable? Well, obviously I can set my own frequency so I doubt that you will care either way. I don’t have any regular viewers (or at least I don’t think I do) yet so I doubt anyone really cares. :-p

Is every day (or more) too much? Is once a week too little? Is it more about the quality than the quantity? I would love to re-assure anyone reading this that I will only blog when I have something interesting to say, but we all know that isn’t going to happen. Maybe occasionally, but overall I am pretty sure that there will be some shockingly boring updates. For that, I will apologise in advance.

So in conclusion, we know that I might, or might not be a regular blogger, and we know that they might, or might not be very interesting. Something to look forward to I think you will all agree!

Now we understand each other, then on to something (hopefully) more interesting. I want to properly introduce myself and tell you all why I decided to start this blog. Here we go…

Almost a year ago (give or take 2 weeks) I was ill. Nothing major, just a bad virus. I was off work for a couple of weeks with that and frankly felt rubbish. The second week was more the recovery fatigue that is a common after-effect of a virus. However, that never really went away. I was told I had Post Viral Fatigue Syndrome. Those two weeks went into two months, and then to four months. In January I was officially ‘upgraded’ to Chronic Fatigue Syndrome (CFS) (not that it is that different really, it just the time it takes to get over it really). To add to this I have a side order of mild depression/anxiety which is an effect of the CFS.

It could be a lot worse. I can work (although not full-time, but I am working on it). I can have occasional ‘normal’ days. I am okay around people I know, but put me into a situation with new people I tend to panic a little. I have a very good mask and can hide it fairly well most of the time. BUT it is utterly draining. I just want to be normal again. I long to be able to do the things that normal people do. I hate that my current ‘norm’ is just a few days at work followed by crashing out and shaking/aching/hurting. I need to re-gain control over my emotions (I cry at absolutely anything!). I crave the day that I don’t feel sick to the bone. And mostly I want to feel happy overall.

It’s not that I am not happy as such. But I am not as happy as I want to be. It’s been a tough year and I am stubborn and will not give in. I push myself too much but if I didn’t, I wouldn’t be quite at the stage I am.

So, what has this got to do with me writing a blog? Well, I need to focus everything that is going on in my head into one direction. I think FAR too much about anything and everything. I really need to put those down somewhere to enable me to focus my energies on getting back to normal. The more I stop the cycle of thinking (by putting it here) the less I will worry about it all. Well, that’s the plan!

I hope it will be interesting. I don’t want to bore anyone.

Next decision will be what will I write about next?